Wednesday, April 25, 2018

Brain Drain

Dementia with Behavioral Disturbance, unspecified dementia type

This is the Primary Diagnosis for my Mother in Law.

What does this mean?
According to the some articles Dementia is now considered a fatal disease. That said, let's not freak out. Let's look at it logically.
Our brain is an organ that controls the rest of our body. It controls all of our organs. Think of it as our hard drive.
If a segment of the hard drive gets 'corrupted' certain functions of our computer won't work.

Rich is the Financial POA for his mom. It may be a job he is not capable of in the long run. His sister who is 'second' on the POA forms will be moving to Utah in about 8 weeks.
She spent the last two weeks with MIL, seeing how she'd fare in her apartment.

Well, MIL can do most things but her memory is a huge issue. MIL recalls that Mondays at the nursing home are days that they take baths. Her weeks are foggy to her. Certain things from the week before get lost in the memory fog.
So she may not realize that a Monday has arrived and needs that help.
Details regarding medications do stick with her, but if the pill manufacturer changes in any way, she gets rather upset and positive that her meds are incorrect.

Sometimes she has trouble telling day from night.

I signed up for an 8 hour course at, if nothing else, I can learn a bit of how to deal with some of the day to day issues that arise with dementia. Communication is one of the biggest challenges. I need to modify my way of thinking and communicating. The course is free.

We've contacted an attorney and are getting some social workers to her apartment to conduct a Home Evaluation. MIL is sure she will get her 'mind back' and be done with the family invading her spaces. I get that as she has been a strong willed woman who is fierce about her independence.

I've contacted Helping Hands to come out and meet with the both of use also. This way she can have another set of eyes checking on her as I cannot be in two places at once.

We will be investigating Guardianship for mom too. That would allow the family to be family and not be the 'controllers' of her everyday life. 

Chronic Kidney Disease is closely linked to issues of behavioral disturbances, dementia, depression, and sleep issues.

Chronic Kidney Disease was her primary diagnosis but she has declined to the level of having 'Dementia' along with it. 
One wouldn't think that Kidney issues would affect the brain, right?

The kidneys take out toxins in our blood and dispose of them. However, when the kidneys can't do their job, those toxins reach the brain.

No one likes to think of their parent as infirm. MIL's decline to this present state was very slow, so slow as to be imperceptible except for the past 6 months. Her lack of self care was evident, however we could not force her to seek medical care. It wasn't until she had a fall and was taken to the hospital that we were able to finally get her the medical attention she needed.

To that end, she has done very well. Five weeks of Physical Therapy and socialization, walking, and being on a schedule all improved her physical appearance and the edema in her legs while she was in Rehab.

Since she has returned to her apartment, she has closed her door to the outside world and retreated to her chair and bed. 

I do look at the bright spots though. Some days she is the 'angry' upset woman, and then there are those days were she is sunny and happy. 

I will have to lean on Social Workers for assistance as I am already the CareGiver to Rich. I'm not sure how to navigate this new issue on my own.

One step at a time, just like our journey through cancer and stroke.

Saturday, March 24, 2018

Elder Care

I thought I'd toss this in here as I really don't want it on my regular blog.

On the first weekend of March my mother in law who turned 87 on the 12th fell in her apartment and couldn't get up.
Rich's daughter and son in law found her on the floor.

She didn't want to go to the hospital but the EMT's did convince her to go.

She has severe edema in her legs and feet. Since Christmas, I've been trying to get her to go to her doctor and address those issues. MIL wasn't receptive to going to her physician or any doctor. She figured that she'd be just fine.

After nearly 20 days in rehab at the local nursing home, she is walking with a walker and moving about quite well. The edema has not gone away. In stage IV of chronic kidney disease, I don't think it will. PT and OT have improved her mobility and strength. We got her some special shoes/slippers for people with swollen feet. She hasn't been able to wear regular shoes since December.

We've discovered that MIL has some memory issues. The nursing staff is attributing that as to the reason she probably fell. MIL had a system for taking her meds but the general consensus is that her memory failed her and perhaps mixed up her medications.
She hadn't been eating regular meals, picking up after herself, or bathing either. I was desperate before the fall. She needed care and refused to get it. Or..simply forgot.

Here is the twist. There is no way of forcing someone to get medical care. However once she was admitted, two doctors invoked her POA of Healthcare. That meant she was not capable of making medical decisions on her own behalf.

It also threw in another terrible twist. She had never set up a POA for her financial matters.
If Rich had not been on her checking and savings account, her bills could have gone unpaid.
There are limitations.
Since MIL had not been taking care of her debts and some odd trends in spending for months...with no POA for Finances, we are helpless to take care of those things.
Once she returns home, if she is deemed no longer in need of a POA, she can do as she wishes.
She can not go to her appointments, she can choose not to pay her bills, and she can choose not to ask for assistance.

Legally? There is very little we can do to assist her without her approval.

The laws were set up to protect the elderly and I get that. I want to afford her all the dignity she needs. But.
I am at a huge loss as...a daughter in law as to how to assist her.

The nursing home is setting up an alarmed medication box for her to take her meds properly. MIL is resisting that saying she can take them just fine.

I hope that the med box works out and we can convince MIL to use it. I hope we can convince her to continue to exercise once she gets home too.

This is my first experience with caring for an elderly parent. What an incredible maze of paperwork, forms, and legal restrictions to jump through!

Tuesday, January 16, 2018

No Easy Answers

We've fought through throat cancer treatments and recovery. We seemed to do so well after that until the stroke came to strike out hard.

Well, the recovery physically from the stroke was amazing. Rich could walk, and move with no after effects. His speech had issues but most people can eventually get what he is trying to convey.

Then winter came on. Typically winter is his most difficult time anyway. Mentally it is draining because the weather is cold and the days are dreary. However COPD plays a huge factor in this too. 
Too cold? He can't breath outside. The cold air sends his bronchial tubes into spasms and it feels...well. No other word to describe it, like suffocation. Even with something over his mouth periodically to warm the air. Breathlessness or dyspnea is not a nice thing to feel. 

During the extreme cold days I have done the chores by myself. Even I have a bit of trouble while hauling a sled full of hay up the where the two of the bulls are kept. It is a steep walk in the summer and the winter. Extremely hot humid air and extremely dry cold air are enemies of getting your breath.

Depression has set in. It is like having a huge Black Cloak hanging over his head. Most mornings I pour his coffee when he gets up and give him a kiss. The he sits and stares out the window. The difference now compared to a year ago is the blank look of nobody there when I glance at him. I ask what he is thinking and he blinks as if the sound of my voice brought him back from....what he describes as 'No Where'.
He visits No Where quite often these days.

And when we do converse he talks about how he is no longer of any use, he has no purpose. If he weather is good enough for him to venture out and help with the morning chores, he gets dressed and goes about the morning routine.

When we come back in, he sits and stares off into No Where. Eventually he says that he *is not worth a damn* and gets up. He walks to the bedroom and goes to bed asking me to wake him up when it is time to water the stock.

Tremors. I'm not sure what to think of them. His father had what was called "Essential Tremors".  Rich has had them for a long time but they were a problem. Now they are in a very severe way. He can't carry a coffee cup across the room without spilling a trail of coffee. He feels terrible about it.

As his COPD meds are increased, I see a direct increase in the tremors. I looked up the causes of ET and found that COPD meds contribute to it. What a mean thing. COPD requires certain meds which in turn can contribute to worsening of the ET.
NIH had articles relating to the fact the ET are familial. In other words, it can run in the family. Rich's father had ET, Rich's mother has ET. It affected his fathers voice, it affects his mother's voice. At the young age of 68, it is affecting most actions that Rich takes along with his voice at times now also.

COPD unto itself is an insidious disease that is not curable. The doctors tell you to stay active. Simple to do if you can breath. 
Rich does stay as active as he can.

But the viscious downward spiral of COPD, the results of the stroke, the tremors, and feeling lost all add to a fairly significant winter depression. 
He feels somewhat hopeless and helpless. 

His only escape is to go sleep. And sleeping most of the day and the night do not help any of his health issues.

I find it interesting that the doctors say: You are doing so well! You made such a miraculous recovery from all the things that have been thrown your way!

To this man, each fight he's gone through has taken away a part of what he wanted to be and defined himself to be.
One counselor asked him to consider the fact that this would be his new normal.

I understood where she was going. Accept this and move forward.

I may be the type of person who can do that. But he can't.

He has always been a 'fixer'. If there was something that should be fixed, he'd fix it. Replace brakes? Muffler? Build a new and improved dog house? Insulate a water tank? All these projects are partially started and now sit gathering dust. 

He can't fix himself. He feels if he could understand exactly what went wrong, he could fix it.

In the past two weeks he has had other slight incidents that lead me to believe that he may be having a TIA. It happened quickly and was gone. Poof. 

Before I get told to rush him to the ER. I have. The results have not been exactly stellar. 
To be fair, the local hospital did do a good job in making sure that he was transported to the nearest trauma center. But only on orders from the VA.

Is there an easy answer to all of this? No.
Of course not. 

Saturday, January 6, 2018

Finding Resources

ADRC, we are pretty lucky to have ADRC in our state. I'm not sure this organization is in all 50 states or not. However there is a very simple and helpful site on the internet called Eldercare Locator. Simply type in your zip code and a list pops up on the next screen with what is available in your area.

I had a very good meeting with Tricia from ADRC. Finding help or a support group for caregiver is daunting. When Rich had cancer the Madison VA offered a support group.... the drive would have been two hours one way for a caregiver's meeting and 'workshop'. Um.
Nope, that doesn't work.
Gunderson Lutheran in LaCrosse offers a once a month meeting for Stroke CareGivers. One hour drive.
Nope, that doesn't work.
The Tomah VA offers a once a month meeting for CareGivers to Veterans. Hour and a half travel time one way.
Nope, that doesn't work.

Tricia commented that they have a support group for CareGivers for Dementia and Alzheimer's patients. This may be a good fit as Rich has trouble with communication and memory too. I said I'd go. After all, meeting with other people who are going through similar situations can only be a plus for me. Besides that, it is 20 minutes from home and I get to see other people.

I know, that sounds awful doesn't it?
I've convinced Rich that we'd even try the Memory Cafe in February.

We quickly moved into other areas of concern. Tricia made a phone call to the VSO [Veterans Service Officer] downstairs and she came up. We went over some of the things offered by the VA.

My other concern was trying to get some assistance or help for my reluctant Mother in Law. She has declined in health and in her ability to do things for herself.
I'm having a tough enough time getting everything taken care of in my own place, let alone trying to take care of her and her place too. She has a once a month housekeeper. That is just not cutting it at all. Her little apartment was filled with trash on Christmas Eve along with mounds of dirty dishes. She just said she couldn't take the trash out and just didn't feel like picking up.

Anyway, there is a stipend that we can get through the VA to assist us in helping Mom. Interesting.
She could get help from the state and county if her assets were two thousand or less.
However, we can get some assistance through the VA because we are assisting Mom. Okay, it sounds weird, but it would allow me to hire a certified Home and Personal Care Helper ... well something like a once a week in home helper that could do light housekeeping, assist with running errands, shopping, and at some point personal hygiene. The average price for hiring someone like this is about $19 to $25 per hour. I cannot afford that for her on my own so this is an alternate choice.

It is cheaper to help an elderly person stay in their home and help them, than it is to transfer them to a care facility.
I know we had approached Mom to get in touch with ADRC more than once and she said no.
Now we have to tell her that WE will get her the help. I hope she takes it.
Yesterday I got called out of the blue with an urgent..."I need my pain prescription!" I ran to town and picked up the script and delivered it. I couldn't stay as I had to get back for evening chores and for Rich.

A quick glance around the apartment told me that she hadn't changed or made her bed in a long time. Her hair was matted and she basically looked pretty gnarly. She told me that her legs had swelled again so tight that she couldn't hardly get out of her chair.

We will be going to her apartment today or tomorrow and presenting her with the option of some help.
I can't knowingly let her live like this. Yet I can't watch over Rich and take care of her also...

I spent the next 2 hours with Cyrstal from the VSO office. We put some paperwork together for Rich filing also for Agent Orange. There will be no money for that, just getting his record updated to include his AO contamination.
Apparently the VA is accrediting COPD and lung issues along with a huge variety of cancers to AO. Good to have those on record now and not later.

The last bit of work I have to do is file to be Rich's official CareGiver. I will be taking a class through the VA but provided through the county office. This last filing if approved [lots of paperwork and a doctor visit] would assist us and 'pay' me to take care of Rich.
Are you ready for the huge amount?
Nearly $30 per week!

I will not complain. It may help out with groceries right? However the bigger bonus will be that I will qualify for respite care which I anticipate needing in the future. IF I don't take care of me, no one will take care of him.

So I am leaving anyone who reads this with a few thoughts.

Don't wait until it is too late if you have an elderly person in your life. See if you can sit them down and talk to them.
Do your research now.
Because ... tomorrow ... or in a few years, we will be that elderly person who will need these resources.

Thursday, December 28, 2017

Severe cold and Depression Suck

It used to be that you didn't dare use the word 'suck' in your writing as it would offend someone, somewhere. However our world has changed a bit now hasn't it?

I contacted ADRC which I said I would but only because things sort of came to a screeching 'whatchyamacallit' this week.

The cold weather has taken its toll on Rich. He has such a hard time with subzero temperatures. I've let him do what he could so far this winter. However since I knew things were going to get very cold, I moved the second batch of cattle into a larger area and we put out a bale feeder. Now they can all feed at their comfort and drink from one large heated stock tank.
Clap clap clap, hurray for me!
There are still 3 places to carry water to and if I do it with small buckets and make more than one trip, I can get it done by myself.

We got the house all spiffed up for the 'kids' to arrive. Arranged for mom in law to come over. We planned how we'd pull up right next to the one little step and lay out a non slip rug...we even discussed having 'spotters' for her.
I bought a cover for the couch instead of the old ugly looking thing I've used forever. It actually looks nice and Morris loves it.

Rich was having such a hard time with being outside I got up early and took care of all of the chores. I gave the hounds new bedding and heaped up the wonderful smelling pine shavings. They were grateful as could be.
I pried the fodder bales with a pitch fork and the cattle seemed to smile at me.

Then the phone call. The 'kids' couldn't come. When Rich hung up the phone it seemed as though his face had *transmorgified* yeah...not a word, but there you are. The light died out of his eyes and he announced that he was going to bed.

Later that day we talked.
Him: Why can't I do anything?

Me: What can't you do?

Him: I can't do chores, I can't breath, and... maybe...
I waited.

Him: Maybe I'm depressed. Why am I like this?

Me: [I clutched my hands together below the kitchen table] Well, throat cancer took its toll, the stroke has not been an easy thing to over come. You look good, you look fine, but...with what you have been through in the past two years? It has beaten the crap out of you.

Him: You are saying I'm [he stops, looking for a word as he often does...] having get to older.

Me: Well, I am getting older also. [I understand so much of what he wants to say, however it is often the same conversation each day now.]

Him: You aren't like that. You are going to getter.

Me ~ I stand up and hug him. His speech gets very garbled which indicates his frustrations and sadness. This is how he is now.
When he gets upset or down, he loses words and thoughts.

Me: I do love you.
Him: I'm going to nap.

Well I sit down and compose an email to our local ADRC [Aging Disabilities Resource Center]. I ask for help, I ask for some tools to deal with my husband.

I want to hug him, I want to yell at him. I want to hold him and I want to throw things.
I need to stay healthy and sane to help him.

I write a note to self. Call his doctor at the VA. Is it a bigger COPD issue? Mental health issue? Physical issue? How can I make his days more meaningful? How can I help him day to day and not lose my temper.

Perhaps Tricia can help. We will be meeting on the 3rd at 1PM.
I know I won't find the answers to everything, however I will be able to go in some sort of direction.

Sunday, December 17, 2017

The End Game

Well here we are. The last entry in this blog was 8/16/16.
Rich had just completed one of his last check ups with the oncology department.

Let's jump forward to present date.
On May 6th Rich had a stroke.
I wrote about it afterwards on May 12th.

I kept up with updating things and how I resigned from work 3 days after the stroke to stay home and assist with my husband's recovery.
He is an amazing man.

Cancer was big and scary. And it still hangs over our heads like the Sword of Damocles. Will it come back? Can it come back? Will we fight with it? Well, the answer to the last question is no. The other answers are unknown. Who knows what is in the future for us right?

I am now an unemployed caregiver. That is fine, everyone says how nice it is to be 'retired'. I'm not sure retired is the proper term at all.

Caregiver: A family member or paid help that looks after a sick or disabled child or elderly person.
Retired: Ceasing work. Having finished one's active working life.

I think unemployed caregiver is the proper term. Let's add. Farm help, chore person, house keeper, chief cook, and bottle washer. Appointment maker and so on.
Actually the whole process has been fairly good. Financially things are a bit tight, but all of our years of being frugal has paid off. We owe nothing on our vehicles and the only item left is the remodel loan.

I had felt that I'd be able to return to some sort of work by now. But that isn't happening.

Rich's COPD is not getting better. I don't know if it is related to the stroke or just the insidious disease marching down its timeline of destruction.
I know that sounds gloomy, but I am being pragmatic. It has always been the 'elephant' in the room. There is no cure and the end result is death.

So what is our next Long Road?

Our next long journey will be dealing with the after effects of the stroke, the continuing task of living with COPD and how we end up dealing with our lives until the end.

One thing we are not afraid of to discuss in our little house is death. It is there and it will be the end game for all of us.

So I will continue to write things here regarding how we deal with health issues and the end of life.

Tuesday, August 16, 2016

14 Month post Cancer follow up

Today is the 14 month post cancer follow up. 
That word still lingers in the back of our minds lurking as we continue to go through appointments with ENT, CAT scans, and mild scares from 'something showed up' we need another scan. was nothing.

However the good news is that Rich is doing better and he has this behind him. 
He also told the doctors that he wouldn't ever go through treatment again. I know he is solid in those thoughts. Chemo nearly killed him and he reacted so poorly to it. 

I'm hoping that our follow up visit will be another one where Dr. Witek slaps him on the back and tells him he is doing well.
We may have passed that magical one year date and now look forward to a 5 year prognosis.

Statistics show that if the cancer is to return, it will in the first year...or within 5 years.

So we still live with a cloud over our heads. However that cloud feels pretty distant at this time.